Just the other day, a friend of mine was asking me to explain my flares and that got me to thinking about writing a post about various flares that I and other autoimmune warriors deal with. The common theme in autoimmune disorders is that most of them do flare from time to time. Some people get flares that only last a few hours, but others get flares that last for weeks or months at a time. I have personally had flares that last up to 6 weeks at a time. So far that has been my longest flare ever.
When it comes to my flares, I would say that the Interstitial Cystitis flares are, by far, the worst pain that I experience. Out of all of my various diseases and conditions, nothing is as painful as the dreaded bladder flare. When I get a bladder flare, or an IC flare, as I tend to call it, everything hurts. Every movement, every breath, every spoken word sends pain throughout the entire bladder area. The pain will extend down my leg, around my back and sometimes it feels like a knife twisting in my bladder area. It will also cause frequent urination and urgency in urination. This pain can come on gradually or all of a sudden. The flares can be caused by various food, drink or activities. Sex is one of the biggest triggers in my case, along with stress. Between those two triggers I flare almost every day.
Although IC flares are the worst pain that I experience, it is not the only disease that I have that tends to flare. Before my autoimmune diagnoses, I was diagnosed with Fibromyalgia. Now, due to the severity of my other diseases, Fibromyalgia is the forgotten disease. It wreaks havoc on my body just about every day in one way or another, but when it flares, every single muscle in my body aches and feels like it is cramping or spasming. The pain gets worse in the areas of my body near the Fibromyalgia trigger points, but the effects can be felt everywhere in my body. Fibromyalgia also causes itching skin and the feeling of bugs crawling on you… I get both of these symptoms often.
Last, but not least, is Scleroderma. I have read conflicting information regarding Scleroderma flares. Most people will tell you that Scleroderma does not come in flares, but there are others who say that it absolutely does. I belong to the latter group. There are certain days and certain times of the day where my symptoms are worse than others, and that constitutes a flare in my humble opinion. When my Scleroderma “flares” my Raynauds symptoms will be worse. I will also suffer with a lot more joint and hand pain. My fingers get swollen and achy. My rings get stuck on my fingers during a flare. Most mornings I am flared up like this, and my husband spends the first hour of my day massaging my hands and fingers. If he were not to do this for me, I would be unable to move my fingers for a couple of hours. I’ve been dealing with this for quite a few years now, and we have it down to a system as far as when and how he massages and stretches my hands and fingers. It’s the little things in life that get me through…
Now that we have covered what my various flares feel like and how I manage them, we should talk about the mental effects of these flares. Mentally, I’m already fighting an uphill battle since I have Bipolar Disorder, PTSD, OCD and severe anxiety. When my flares are especially bad or are lasting for an extended period of time, my mental health symptoms become more pronounced. It is during the most painful flares that I get depressed, and have occasionally considered suicide because of the incessant pain and anguish it causes. That is the lowest of lows, in my opinion. It hasn’t happened often, but there a few times that I have had to reach out for help with the mental aspects of my autoimmune life. It’s a scary point to get to, and it’s definitely commendable that I have the support system that I do to get through these darker days.
The worst part about having multiple diseases that tend to flare, is the fact that they never coordinate with each other. I can have three different kinds of flares all at once, or I can go days or weeks with hardly a flare at all. More often than not, what actually happens is as soon as one flare stops, another begins. It’s a never-ending-story when it comes to my pain and flares. I almost never have a pain-free day and that gets super depressing, but still I carry on and try to keep a smile on my face so that those that I love don’t know how badly I’m really suffering. This is my autoimmune life. This is my reality. This is my life – forever.